March 19, 1999
We arrived early in the morning before surgery. Grandma Sweetie, Uncle Pete and Aunt Noreen were already in the NICU. It was too much to take. There were so many things hooked up to Kyle. I remember a nurse asking me to sign the consent forms and I couldn't even see the lines because I was crying so hard. We sat down with Dr. Tweddel (the surgeon) who is a God-send and has saved our son. He explained the surgery and was prepared to answer our questions. One last kiss and then Kyle was taken to surgery. And then we waited......................................................................
Mary Anne would come in about every couple hours to let us know how things were progressing. She even got us to laugh. Good News- Kyle was holding his own.
During the surgery we visited the PICU where Kyle would go after surgery. We saw other babies who had heart surgeries to prepare us for what would like after surgery. That was not easy!!!
By 3:00 PM Kyle was off the heart lung machine and doing well-considering. We finally saw him about an hour later. It was overwhelming all the equipment in the room. He was heavily sedated and would remain that way for a few days.
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We went home that night so that we would could see Kevin. We really hadn't seen him much. Our families were great about keeping him busy.
March 24, 1999
Kyle was healing nicely. The big line in PICU-" Kyle is doing what he needs to be doing!" The swelling was finally down and the chest was closed. No one but Grandparents are allowed to come visit. We wanted to keep the germs to a minimum. Dan and I take turns coming to see Kyle so that Kevin has one of us home with him.
March 27, 1999
The last few days Kyle was not so heavily sedated. It was good to see him move a little and try to open his eyes. The lines were taken out of his umbilical cord. Tonight was extra special because I finally got to hold Kyle for the first time since he was born. My arms ached from holding him for so long but I wasn't about to put him down.
March 28, 1999
Breathing tube was removed. No more tape all over his mouth. Catheter and drainage tubes are gone also!! We could finally hear him cry. Slowly he was waking up. Many IV's have been removed.
March 29, 1999
First time eating breast milk. They gave it to Kyle through his NG tube. His weight was a little over 8 pounds. Every noise, cough or hiccup sends me looking at the machines and reading the numbers.
March 30, 1999
Kyle was moved from PICU to NICU. We prefer PICU because the patients all have separate rooms. There is not as much privacy here but it does mean he was getting better. The main issue right now is feeding. We had to teach him how to suck again. Mostly he is fed through his NG tube.
April 1, 1999
Next concern was his addiction to his pain medication. Kyle was not sleeping well and was very jumpy at every sound and very sensitive to the light. They give him phenobarbital and only small hits of morphine. Somehow he gets through that hurdle
April 4, 1999
Today is Easter! We finally bring Kevin to the hospital to meet his brother. Kevin wanted to keep putting the pacifier in Kyle's mouth. I don't think Kevin knew what to think. He was more interested in eating his jelly beans.
April 5, 1999
Closer to going home-Kyle is moved to the fourth floor. We still have to work on the feeding issue and get him to gain weight which is the hardest issue with kids who have HLHS. We stress to the nurses to please bottle feed Kyle. He is able to drink 25-30 cc of milk before falling asleep. The rest is fed through the NG tube. Grandma comes every day after work to rock Kyle.
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April 12, 1999
Dr. Tweddel checks in and we are there to talk with him. We are told that Kyle has severe TR. This means that Kyle's tricuspid valve was severely leaking or regurgitating. Nothing will be done except to keep an eye on t. It may get better on its own or may need correction at the next surgery. What else is going to happen?
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April 13, 1999
After expressing our concern about giving Kyle his food through his NG tube rather than working with him to drink his bottle, the NG tube was removed. Guess what? He did just fine!!
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April 15, 1999
Finally we get to take Kyle home. He has been gaining weight, and once they took the NG tube out, he was eating great. He does have a reflux problem but nothing a good burp and some Zantac can't help. We had to learn infant CPR before taking Kyle home. The nurse went over his medications and we were finally able to take Kyle home.
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